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Is there anyone out there with a child with CSWS?
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AmySara posted:
My now seven year old son developed epilepsy at the end of December 2012. Last week the doctor wrote me that they recently think (many EEGs later) that he has CSWS. When I began to read about it, I became very worried.He is on Keppra and the ketogenic diet. They just added Onfi to his regime in response to this new diagnosis. I want to seek a second opinion on the diagnosis. Does anyone have recommendations on where to go, preferably in the United States? Does anyone have a child with CSWS who would be willing to share their experiences with me? Thank you.
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dancer86442 responded:
Hi AmySara,

Welcome to Epland/Epilepsy Community. I do Hope someone is Lurking & will step in w/ More support & Info. Just keep in mind that you & your son are Not Alone. We Will be here for you.


I am interested, too. Why? I myself have just recently discovered (w/in the past 5 yrs) I have Wavy Line Syndrome, after a portable 72hr EEG was done. All my Previous EEG's (1-2hr) had been Normal (no Spikes or Wavy Lines, but, I wasn't asleep for them) for 30 yrs. My DR neglected to tell me this was a seizure syndrome. I learned from PPL on Facebook. (You Mite find others', there, to talkw/, also.) My understanding of my Syndrome is that it occurs mainly in children. In their Sleep w/ no apparent activity. I am a Senior Citizen. And the DR did not Add any new meds to my regimen. My tonic-clonics have been controlled for over 25 yrs on Phenobarbital 180mg

Want a Second Opinion? This site has a List recommended by others' from all over the states w/ Ep. http://www.epilepsytalk.com/ But, you Need to Search for an Epileptologist (seizure Specialist) They are listed, too.

I, also, noted epilepsy.com on my Google Search had a conversation on this subject by 2 Dads who are trying to raise awareness of your sons' disorder/syndrome. Have you visited that Site? (strange, the date was 2012, too.) They, too, have the same list Phylis' does. And there is no need to join either site to read the articles.

May I ask what your major concerns are? And do you keep a Daily Journal for your son? Please read our info, located in Helpful Tips.


Please keep us updated on your son't progress. Hugs!


Love Candi
 
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dancer86442 replied to dancer86442's response:
I just read some material on this. I now understand some of your concerns.I noted Surgery was recommended. If you have questions about Surgery, please ask Angie or Dana. They have been there, done that.
 
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AmySara replied to dancer86442's response:
Dear Candi, Thank you for your messages. I am most concerned about consulting with an epileptologist who has some knowledge of CSWS. Because it is such a rare syndrome with such a bleak prognosis, I want to get additional opinions. My son currently has no developmental delays. If he does have CSWS (which his EEGs suggest is the case), I want to help him as much as possible in what's presumably an early stage of the syndrome. I consulted the list you recommended. I don't think I saw anyone listing this as her/his specialty. If anyone knows of a good epileptologist who has treated children with this syndrome, I would be very grateful if s/he shared this information with me. I do not know about Wavy Line Syndrome. Most of what I read about CSWS suggests it is a childhood epilepsy, but my overall sense is that they know little about it and subsequently little about what it might be related to. Many thanks and best wishes to all, AS
 
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dancer86442 replied to AmySara's response:
Please clik my user ID & email me. Or join Facebook & friend Jeanne Phelps. A Group I belong to may be able to help. We aren't allowed to post Drs names on WebMD, which is why I am suggesting you Friend me or email me.
 
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dancer86442 replied to dancer86442's response:
http://www.kidsepilepsy.com Maybe someone on this site can help. Let me know. Hugs
 
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dancer86442 replied to dancer86442's response:
Please keep checking w/ us. A friend who Knows More about CSWS will be joining us, soon.
 
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AmySara replied to dancer86442's response:
Thanks, Candi, and other potential readers. I joined the above site that you recommended. And, I will check back here periodically. Best wishes, Amy
 
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dancer86442 replied to AmySara's response:
I was hoping our Friend, who is joining us to offer Advice/support, would have replied to you by now. She was having Issues posting last nite. Hopefully she will be w/ us soon. I asked Friends in my Facebook group about Info & Boston Children's seems to be the preferred Hospital w/ DRs who Have dealt w/ this issue. I Wish I could give you the name of the DR to contact. Clik my Profile Pic. My Email Addy is included in my Profile/Epilepsy Journey.
 
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dancer86442 replied to dancer86442's response:
Wasn't sure if you had read this article from another Group. So, I am posting it for You & others' who may need the Info. http://www.epilepsy.com/newsletter/feb12/csws
 
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saxofone1 replied to AmySara's response:
Hi Amy,

welcome to the family. This is Angie, one of the young ladies Candi mentioned earlier. I don't have any knowledge/familiarity of your son's condition but I am here to offer you support in any way I can. Scream, rant, or shout out your feelings/frustrations whenever necessary.

How about the efa.org?

Hugs to your son and you,

angie


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